Discussions By Condition: Nerve conditions

trigeminal neuralgia

My grandmother has this awful complaint. She is 85 and when she gets the stabbing pain in her face she screams sometimes for an hour sometimes for only a few minutes.She has had surgery which only lasts for a year then comes back. Addenbrookes have told her there is nothing more they can do surgically they now give her morphine which still does not touch the pain.We don't know what else to do for her. Is anyone out there taking a drug that is working?Are there any test trials of drugs going on?The pains are now in her jaw bone shooting to her chin, if anyone has any advice we would welcome it even if it is to tell us everything has been covered. She was taken into hospital today the pain was so bad. When she got there the pain had gone and she looked better then we did. Why is it that whenever we take her to hospital no doctor has heard of this condition? Or they disbelieve what you are saying?

17 Replies:

I take Lyrica for nerve pain to quiet the nerves down and also Opana which is a new Oxymorphone type med that just came out in June 06. I cant believe the dr never heard of Trigeminal Neuraligia or her symptoms. Ive seen them plenty of times even on the internet to know it can just "happen".Good luck to her..I posted under Neuropathy pain I think if you want to read my problm

I have had this disease since 2001 ,the drs have put me on lyrica in june ,I have also been on morphine,percocet. the pain is so bad Im almost in a wheelchair,because I cant walk It has beenso rough on me and my kids.I not only have neuropathy ,I have fibromyalgia .

Jackie-I'm so sorry to hear that your grandmother is going through such excruciating pain-I had it a couple years ago and it lasted for several months and then went away (doc says it may or not return but so far so good). It must be awful for you to have to watch her go through so much pain. The first time mine hit me the pain seemed to come out of nowhere. It was an electric-like shooting pain into my jaw. It only lasted about a minute, then stopped.Then a couple days later it hit again, but this time it was more profound and I had pain shooting behind my eyes, in my jaw and forehead. Little things like brushing my teeth, or washing my face or just someone touching my face could bring on the pain.There are new trials out using Tegretol, Dilantin, Neurontin, and Baclofen. I started off on the neurontin but when Lyrica came out, I started taking that. The anti-seizure agents in these medications suppress excessive nerve tissue activity.If medications do not adequately control TN that progressively worsens, surgical procedures may have to be considered. Is she seeing a neurologist or neurosurgeon?Hope this helps, Jackie.

Jackie-I'm sorry-I meant to hit reply to your post but must have hit new thread which put my reply on top (but I deleted) and yours on bottom-sorry.Jackie-I'm so sorry to hear that your grandmother is going through such excruciating pain-I had it a couple years ago and it lasted for several months and then went away (doc says it may or not return but so far so good). It must be awful for you to have to watch her go through so much pain. The first time mine hit me the pain seemed to come out of nowhere. It was an electric-like shooting pain into my jaw. It only lasted about a minute, then stopped.Then a couple days later it hit again, but this time it was more profound and I had pain shooting behind my eyes, in my jaw and forehead. Little things like brushing my teeth, or washing my face or just someone touching my face could bring on the pain.There are new trials out using Tegretol, Dilantin, Neurontin, and Baclofen. I started off on the neurontin but when Lyrica came out, I started taking that. The anti-seizure agents in these medications suppress excessive nerve tissue activity.If medications do not adequately control TN that progressively worsens, surgical procedures may have to be considered. Is she seeing a neurologist or neurosurgeon?Hope this helps, Jackie.

I have rsd was im hand arm/shoulder. recently I have been expieriencing it in my face like someone threw a hot cup of coffee on me. it scary rsd is supposed to spread and im scared to death of it happening again. 33/m have drs. apt. this week. on oxycontin 40mg 4xs and still sharp burning pin *****s on neck and forehead also jawline. going nuts dont wont increase in meds. 4years have this problem.

I have a friend who has TMJD-Temporal Mandibular Joint Disorder. Many symptoms the same. A DENTIST has developed treatment for this called the AMPS Device(Google it). Mis-aligned jaws and nighttime teeth grinding are supposedly the culprit. Also found info on MASSAGING THE TOP BACK ROOF OF MOUTH. Supposedly, there are two muscles or ligaments in front of the ear(accessible behind the top row of your back teeth),can be massaged or manipulated to provide relief. The pain emmanates(in this hypothesis)from the teeth being grinded all night long, creating a lactic acid build-up and over-stressing these muscles. Thus, cramps develop and transmit directly to, AND CONSTANTLY IRRITATE, the Trigeminal nerves. Try clenching a fist for 5 minutes straight as hard as you can and you will get the gist of this theory.Hope this helps...cheers.

There is no connection between TMJ and Trigeminal neuralgia.Trigeminal neuralgia (TN) is a condidtion resulting from a problem with the trigeminal nerve, (the 5th cranial nerve.).Some symptoms may seem similar but TN is a neurological or neurosurgical problem.TMJ is dental.Thank you.Carol Jay Levyauthor A PAINED LIFE, a chronic pain journeymember, cofounder, PWPI, Persons With Pain Internationalmember U.N. NGO group, Persons With Disabilities

I never heard of this excruciatingly painful condition until I got it! I thought I had five teeth in a row all in need of a root canal. Gosh, it was awful, and none of you will be surprised to hear pain meds didn't help much.I had shingles on the right side of my mouth and throat, they subsided, then this pain began. My endodonist hit it right on the head, because HE once had this himself -- neuralgia triggered by shingles (or any form of herpes). He got shingles on one side of his body, then as soon as the shingles subsided, he began experiencing stabbing pains with every step, on that same side. It lasted an entire year!All of a sudden I started hearing about this condition everywhere. It seemed like everybody knew about it but me! There is no need to fear taking more meds, because the meds they give you for this target nerve pain specifically and don't alter your state of consciousness one iota. I take Lyrica and I've never had the problem since. I also have a prescription for Valtrex, an anti-viral, which I take the second I feel those shingles coming on. The official name of this condition is "post-herpetic trigeminal neuralgia," and Jackie, I CAN'T BELIEVE they never heard of trigeminal neuralgia at that hospital!! Take heart.Rebecca

Has anyone here tried acupuncture as a treatment for trigeminal neuralgia? I would think it very helpful, and much better option than drugs. The problem with pain meds is they often don't really treat the pain. Lyrica may help some, but I have had patients who reacted very negatively to this med. I am currently seeing a patient with post herpetic neuralgia - she had no relief from valtrex, and has shown a big improvement with acupuncture. Just want to offer another avenue of healing out there for you all. Best wishesDOM

I had Trigeminal Neuralgia , and now it is gone. You might not like to hear this, but it went away COMPLETELY AND IMMEDIATELY when I got all my teeth removed. Anyone else try getting their teeth removed? Dentists SWORE that 'removal' would not help... but it did. And no, my pain was definately NOT "just teeth pains" - I had those too, and this was different. Way different, it is the worst pain . Dentists were very reluctant to remove my teeth, I had to really push them, for over 5 years, before I got all my teeth out, and then thats when the TN pain ended. Just getting the worst teeth removed or the most painfull teeth removed didn't do the job. Sorry, but thats my story, and I cannot get much confirmation on it, but I swear its the fact for me I have a theory that it could be related to the "germ theory" for pain conditions... I think there was a type of infection there, due to cracked fillings and root canals. Maybe mercury, I had a lot of that. Morphine did not help that pain at all. When I did have Trigeminal Neuralgia, I agree that Lyrica works , although mine was a different drug called Gabapentin . Toradol helped too .

I have been dealing with this disease for almost 8 years. It started out of nowhere, just a slight stabbing to my upper lip and then full boat to the whole right side of my face. It comes on usually in times of stress (when I bought my new house, right before my wedding and most recently a few weeks before my first child was born). I have had the same symptoms as most: excruciating stabbing pain into the lip, face and jaw that comes and goes. I can't brush my teeth at times, can chew food, can't smile or talk at certain times. It usually lasts between 2-3 months and then goes away.The things I have found to be useful in trying to keep it in check are the following: Salonpa's on my traps (these are a menthol type of pain reliever that I put on my shoulder muscles to hold back the tension). Tegretol (the doctor told me to start taking 2 a day as soon as the first symptom presents and don't stop until I know its completely gone). Its important for this medicine to get into your blood stream to help stop the zapping from reaching your face. Taking them only when you think you need it won't work. Eating soft foods (biting down too hard can make it worse). Stay away from Caffeine and Salt. These two things are supposedly BIG triggers. Massage therapy also helped (anything to calm your stress helps.)I hope this helps some to those of you out there living with this awful disease.

My grandmother has this awful complaint. She is 85 and when she gets the stabbing pain in her face she screams sometimes for an hour sometimes for only a few minutes.She has had surgery which only lasts for a year then comes back. Addenbrookes have told her there is nothing more they can do surgically they now give her morphine which still does not touch the pain.We don't know what else to do for her. Is anyone out there taking a drug that is working?Are there any test trials of drugs going on?The pains are now in her jaw bone shooting to her chin, if anyone has any advice we would welcome it even if it is to tell us everything has been covered. She was taken into hospital today the pain was so bad. When she got there the pain had gone and she looked better then we did. Why is it that whenever we take her to hospital no doctor has heard of this condition? Or they disbelieve what you are saying?

My grandmother has this awful complaint. She is 85 and when she gets the stabbing pain in her face she screams sometimes for an hour sometimes for only a few minutes.She has had surgery which only lasts for a year then comes back. Addenbrookes have told her there is nothing more they can do surgically they now give her morphine which still does not touch the pain.We don't know what else to do for her. Is anyone out there taking a drug that is working?Are there any test trials of drugs going on?The pains are now in her jaw bone shooting to her chin, if anyone has any advice we would welcome it even if it is to tell us everything has been covered. She was taken into hospital today the pain was so bad. When she got there the pain had gone and she looked better then we did. Why is it that whenever we take her to hospital no doctor has heard of this condition? Or they disbelieve what you are saying?neurotin has helped deal with it but hasn't cured it.

I have had tn for the past ten years. Have had surgery four times, and each one lasted about one year.I was taking Tegretol. That is the best, but can have a very toxic effect. I became tegretol toxic, and am now taking Gabapentin, or Neuronton. It does not stop the pain as well as tegretol, but it does not become toxic.I fully under stand her pain, and am saddened that she has the disorder.Sincerely,Keith Arnoldnkarnold@midmaine.com

Im sorry to see so many people on this topic with this horrific disorder. Mine started about 2 months ago and Ive been seeing the emergency room on several occassions. Its the most painful thing i have ever experienced. I was given so far...carbamazepine - which has really bad side effects, i got an allergic reaction which gave me a rash all over my body...followed by indometacine...which gave me severe stomach issues and blisters in my mouth and didnt even touch off the pain...followed by now - lyrica. Which has worked 90-95% of the time but the attacks i do get are unreal...no pain medication can reach them. Trigeminal neuralgia is nicknamed the suicide disease for a reason...there is no escape from the pain. Im hoping they will be able to help me soon and find a way for me to get through this. No body should have to live like this.All the best to your grandmother, love n lightxxxxlaura

I started out getting pain in my upper jaw and thought it was a wisdom tooth giving me all the pain that would wake me up at night. When after I got the tooth removed the pain continued I knew there was something far worse going on in my head. I went to several doctors complain of a constant pain in my face that would be set off by just chewing or brushing my teeth. After no diagnosis I kept looking for answers online. All the symptoms pointed to trigeminal neuralgia. The pain was so intense and paralyzing, I could not cry I could not scream out because my throat would be paralyzed. I stopped taking all medications I was on for fear it was an allergic reaction. I was on lexapro and klonopin for anxiety and panic disorder. It worked wonders but I was afraid it might be a symptom of the medication so I stopped taking it. May was the worst month of my life. The TN attacks would happen anywhere from 5-10 times a day, I wasn't sleeping and I was anorexic. I'm 5'9" and I was normally around 125, I was rapidly losing weight and got down to 113. I didn't want to eat because I was in so much pain. The only thing that helped me was IBprophen for the pain but it began effecting my liver and I started vomitting from taking too much of it. The doctors never told me what was wrong, did x-rays of my cervical spine, mris, ct-scans, nothing showed up. So I decided to go back on lexapro and klonopin as I read somewhere that klonopin helps with TN symptoms and the severity of the attacks. I'm going to ask to be put on lyrica because I cannot live like this. Sleepless nights, weakness, less eating than normal and an overdose of ibprophen on a daily basis are just getting to be too much. I want a cure. I almost lost hope and during this process I've never wanted to die more. I always thought that being depressed I had a reason to want to die - not until I felt this pain was I fully aware of how strong such a desire could be. After reading this though, I know I have some options I can take to get rid of the pain. Thank you guys. If I hadn't read this I probably would be on my way to a gun shop. The pain is THAT bad.